Treatment and Research Centers

Clinics & Clinical Trials

Appalachian State University and the Center for Literacy and Disability Studies at UNC are conducting this study of visual attention to print during storybook reading by parents and their children with Rett syndrome. For UNC site information, contact the Center for Literacy and Disability Studies by email at clds@unc.edu. For Appalachian State University site information,email koppenhaverd@appstate.edu

The ECAC supports North Carolina Family Voices. NCFV advocates for health care services that are family-centered. They believe that family-centered care is the philosophy of service delivery that best meets the needs of children and their families.

Each county in North Carolina has a Local Social Services Agency. Select your county to view phone numbers, addresses, and agency web site addresses. The North Carolina Division of Social Services works in cooperation with the Social Services Commission, the Local Social Services Agency and other public and private entities.

The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.

CAP/C is a Medicaid waiver program for children (the Katie Beckett Waiver) under the age of 20 who are medically fragile and cared for in the home. There is no income requirement. Services offered include in home care, vehicle modifications, home modifications, access to PT, OT and ST. This program is a payer of last resort so if you have private insurance, it must be billed first. To apply, contact your Local Case Management Agency.

This waiver provides in home support, vehicle modifications, respite, assistive technology and other services from birth through adulthood. Your LME/MCO can help you get Innovations services. There are a limited number of NC Innovations Waiver slots. If the slots are full, your name will be added to the Registry of Unmet Need.

This waiver is only available in counties where the Innovations Waiver is not available. It provides vehicle modifications, in home modifications, respite, and more services for children beginning at birth, with no maximum age. There is currently a waitlist to obtain services.

This waiver is available in counties where the Innovations Waiver is not available. It provides home and community supports, respite, home modifications and many other services. There is currently a waitlist to obtain services.

Education

The Public Schools of North Carolina Department of Exceptional Children ensures that students with disabilities develop intellectually, physically, emotionally, and vocationally through the provision of an appropriate individualized education program in the least restrictive environment.

Conservatorship

Conservatorship (Guardianship in North Carolina) is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should start approximately 6 months before the 18th birthday.

Transition to Adult Services

Transition Transition describes the process from which a child moves from the school system to adulthood. In North Carolina, an initial transition component is completed at age 14 through the IEP process. Contact the Special Education department in your school district of residence for more information.